Research: Five Questions to see if your child has Celiac; Really, just 5?

New research being published in the March issue of Pediatrics aims to help parents and doctors narrow down the possibility of celiac disease by getting the answers to 5 questions. The actual article published in WebMD is called: 5 Questions Find Hidden Celiac Disease in Kids. I would retitle it: 5 Questions Find Obvious Celiac Disease in Kids.

Danish researchers set out to find whether some easy questions could lead a child down the road toward getting a diagnosis of celiac disease and going on the gluten-free diet. I can see where these questions really could be helpful. Parents could easily get the answers to these questions, and in their minds (and possibly their doctor’s minds) either rule out or rule in celiac. If they rule in celiac the child would then get the blood test.

Here are the 5 Questions to find Celiac Disease in Kids:

1. Has your child ever suffered from abdominal pain more than twice during the last three months?
2. Has your child ever had diarrhea lasting more than two weeks?
3. Does your child have a tendency to firm and hard stools?
4. Does your child gain enough weight?
5. Does your child gain enough height?

So do the questions work?

The researchers conducted this questionnaire in a small county in Denmark. At the time of the test, 13 children were diagnosed with celiac disease. By the end of the test another 14 were diagnosed.* Researchers concluded that indeed this questionnaire could be helpful in diagnosing “preclinical and low-grade symptomatic patients with celiac disease,” Peter Toftedal, MD and colleagues at Odense University Hospital in Denmark concluded.

The Problem with the Questionnaire

Let me say that asking these questions absolutely will help diagnose kids… but only those with the most  common symptoms of celiac disease.  My daughter did have symptoms for #2 and #4 above.  What worries me is that the article says nothing about the fact that children can have less typical symptoms that shouldn’t be ignored because they don’t fit in with the above 5 questions.

For example, the Celiac Sprue Association (CSA) has a list of symptoms in children. Of course you should look at the GI symptoms listed in the above questionnaire, but take a peek at all of the other things that should be taken into consideration, according to CSA: (I put an E next to the other symptoms my daughter had)

Celiac Symptoms in Children

How is the child developing?

• Slowly
• Not gaining weight
• Losing weight (E – lost 10% of body weight)

Under age three:

• Growth failure (E)
• Diarrhea (E-daily)
• Projectile vomiting (E- I documented every 9 days for several weeks)
• Abdominal bloating/distention (E)

Older children:

• Crankiness (E)
• Difficulty concentrating
• Irritability (E)
• Personality changes (E, we only noticed when her personality changed to what we now know is normal, when she went on the diet at 15-months-old)
• Poor memory

When I conducted a survey in the fall of 2008, I asked people what their top three symptoms were before diagnosis.  Additional symptoms from parents talking about their children included:

• Type 1 Diabetes (of 3 Million, 180,000 have celiac — 6%) **
• Down Syndrome (350,000 cases, 42,000 have celiac — 12%)**
• Itchy blisters or dry skin
• Anemia
• Headaches
• Brittle hair or hair loss
• Respiratory illnesses/Asthma
• No symptoms at all

Bottom line:  The questions are a good starting point.  But parents and doctors may need to look at a bigger picture to get the whole story.  Please don’t discount celiac if the answers to the first five questions appear to rule out celiac.  It’s true, your child may not have celiac, but he or she also may have atypical symptoms of celiac disease.

*To find more detailed results in the research, you can read the WebMD article.

**Statistics from the University of Chicago’s Celiac Disease Center

Tags: celiac, children, diagnose, questions, research, symptoms